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Health Care Transition Outcomes in Inflammatory Bowel Disease: A Multinational Delphi Study
Gertrude van den Brink1, Martha A C van Gaalen1, Lissy de Ridder1
1Department of Paediatric Gastroenterology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands.
Insights
Successful transition from pediatric to adult care for adolescent inflammatory bowel disease (IBD) patients hinges on self-management skills, not just disease-specific factors. This study identified key outcomes important for IBD transition success.
Area of Science:
- Gastroenterology
- Pediatric Care
- Health Outcomes
Background:
- Adolescent inflammatory bowel disease (IBD) patients require structured transition programs to move from pediatric to adult healthcare settings.
- Defining successful transition outcomes for IBD patients remains unclear, necessitating further investigation.
Purpose of the Study:
- To identify and define the key outcomes that signify a successful transition for adolescent patients with inflammatory bowel disease (IBD).
- To establish a consensus on critical success factors for IBD transition from the perspectives of patients and healthcare providers.
Main Methods:
- A multinational Delphi study involving patients, IBD nurses, and gastroenterologists (pediatric and adult).
- Multi-stage process including outcome list refinement, grading by expert and patient panels, and expert panel ranking.
- Statistical analysis included descriptive statistics and Mann-Whitney U-tests to compare panel opinions.
Main Results:
- Both expert (n=74) and patient (n=61) panels identified important transition outcomes.
- Agreement was reached on eight items, with six emphasizing self-management skills.
- Top-ranked outcomes included decision-making regarding IBD, independent communication, and patient satisfaction.
Conclusions:
- This study is the first to identify outcomes crucial for successful IBD transition, based on consensus from patients and healthcare providers.
- Self-management skills emerged as more critical than IBD-specific factors for successful transition.
- Findings provide a foundation for defining transition success and evaluating different transition models in IBD care.
Background:
Transition programmes are designed to prepare adolescent inflammatory bowel disease [IBD] patients for transfer to adult care. It is still unclear which outcome parameters define 'successful transition'. Therefore, this study aimed to identify outcomes important for success of transition in IBD.
Methods:
A multinational Delphi study in patients, IBD nurses, and paediatric and adult gastroenterologists was conducted. In stage 1, panellists commented on an outcome list. In stage 2, the refined list was graded from 1 to 9 [least to very important], by an expert and a patient panel. In stage 3, the expert panel ranked important outcomes from 1 to 10 [least to most important]. Descriptive statistics and Mann-Whitney U-tests were performed.
Results:
The final item list developed in stage 1 was tested by the expert [n = 74 participants, 52.7% paediatric] and patient panel [n = 61, aged 16-25 years, 49.2% male]. Respectively, ten and 11 items were found to be important by the expert and patient panel. Both panels agreed on eight of these items, of which six reflected self-management skills. In stage 3, the expert panel formed a top-ten list. The three most important items were: decision-making regarding IBD [mean score 6.7], independent communication [mean score 6.3] and patient satisfaction [mean score 5.8].
Conclusion:
This is the first study identifying outcomes that IBD healthcare providers and patients deem important factors for successful transition. Self-management skills were considered more important than IBD-specific items. This is a first step to further define success of transition in IBD and subsequently evaluate the efficacy of different transition models.
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